When Lindsey Clarke went to sleep on the night of June 6, 2009, she had no idea that overnight her life would change forever.
She had given birth to her third child just eight weeks previously.
Yet when she woke to feed her baby at 5.30pm, Lindsey, then 29, knew something was wrong.
Without warning Lindsey, known to her friends as Norri, developed Stiff Person Syndrome – a condition that causes violent spasm and excruciating pain to consume her, leaving her gasping for breath as her body stiffens into a living statue.
Lindsey told Wales Online she remembered the exact moment it happened.
“I woke up but I couldn’t lift my head off the pillow. I had to hold my head up with my hands. I thought it was anaemia causing such severe fatigue I was unable to move my body.”
Lindsey saw her GP that morning who told her it was unlikely she was anaemic. Her symptoms baffled doctors for almost a year, first diagnosing her with post-natal depression, fibromyalgia, chronic fatigue syndrome and lupus.
When the intense spasms quickly spread through out her body she was diagnosed with Stiff Person Syndrome – a rare autoimmune disease that effects one in a million.
“The spasms started in my legs. Then over time it moved to my abdomen. Then it started affecting my arms and hands and then my respiratory system. Now I can’t swallow during a spasm and end up vomiting blood because of the contractions being so hard,” she said.
Lindsey, from Talywain, suffers regular and aggressive seizures and cramps that can last hours at a time.
Her husband Jason, 35, who she met when she was 12, has never left her side throughout her diagnosis and treatment.
She said: “We grew up together, he was my trusting friend. We had so many hopes, dreams and aspirations we wished to fulfil.
“But our dreams have all gone because of Stiff Person Syndrome.
“I feel like I have been robbed and Jason has no choice but to raise our three children alone.”
After Lindsey’s diagnosis Jason was forced to give up work to become her full-time carer as well as looking after the couple’s three children Olivia-Beth, 13, Mollie-Jai, six, and Dylan-John, five.
He regularly monitors her oxygen levels and has to pump her chest to help her breathe during a seizure.
‘When I am choking during spasm, vomiting and coughing up blood because my lungs are contracting so hard I can see the look of fear on Jason’s face,” Lindsey added.
“My whole body goes into spasm. From the tips of my toes to the top of my head, everything is crushed.
“The skin on my face changes and I can’t see because my eyes go into spasm.
If you pushed and pushed hard enough during a spasm you would snap me,” she said.
On one occasion Lindsey had to be rushed to the Royal Gwent Hospital after she stopped breathing during a spasm and turned blue.
Her spasms typically last between 30 minutes and six hours and can occur up to five times a day or once every few days.
Bed-bound Lindsey has not seen the downstairs of her home since December 22 last year – the day she came home from hospital after a prolonged fit.
“The biggest goal of my day is to make it to my bathroom, to crawl or to wall walk but to make it back in one piece,” she said.
“Everything effects me. Sound, movement, noise, vibrations or a change in temperature. A sudden noise that I am not expecting like the pop of a balloon will trigger a seizure.”
Lindsey’s only communication with the outside world is through her laptop. She regularly updates her blog where she documents her deterioration.
Lindsey’s only hope for treatment is to pay for a Stem Cell Transplant but the procedure has never been offered in the UK for anyone suffering from Stiff Person Syndrome. It is offered in Denver, Colorado but costs £300,000.
“The reality is I am rapidly deteriorating to the point that without much-needed treatment, I am going to die,” said Lindsey.
An aspiring solicitor at the time of her diagnosis, now Lindsey’s dream is to live to watch her children grow up.She said: “Each day I watch my tots leave from the view of my bedroom window. They are each growing, changing, developing their own personalities and I am not a part of it. I am only able to see from afar. I feel like I am stuck behind a pane of glass.”
Lindsey is desperately trying to raise enough money for a life-saving operation in the USA.
“If every person who reads this story donated just £1 I would have enough for my operation,” she said.
